a rabble-rouser

I had a number of speaking engagements booked with health conferences when I was diagnosed with breast cancer two years ago. These gigs are scheduled by organizers many months in advance. As the mom of a kid with a disability, I had a burgeoning career as the family voice or the inspirational speaker for health care crowds.

After I got cancer I cancelled all my talks. The reason at the time was that I had no idea what kind of shape I’d be in during or after my treatment. I didn’t even know what my treatment would entail until after my surgery. The unspoken reason was that I didn’t even know if I’d be alive to fulfil my obligations. Cancer, especially at the time of diagnosis, felt like a death sentence to me.

When I popped up a year later, I was quite traumatized but still alive. I was asked to present about my breast cancer patient experience at a health conference. I tentatively agreed, but the more I thought about it, the more anxious I got.

This wasn’t stage fright or about being out of practice. Part of it my reluctance was that I was (and am) still in treatment in some ways. I have ongoing scans, other diagnostics and appointments with oncologists. I continue to be angry about the way I was treated – and am treated – in health care. After great reflection, I turned down this speaking engagement. The topic of cancer is too close to me.

Funnily (or not), many people in health care who I thought were friends and colleagues ceremoniously dumped me when I stopped speaking at their events. I don’t know if this had to do with my cancer, or if the only reason they were friendly with me was because I could do something for them. When I stopped speaking, they disappeared. I know now that it was naive for me to think they were my friends. This hurts but I’ve had so many other losses that I’m trying to shake this one off.

My unease with being a patient speaker at health conferences, no matter the topic, boils down to this: parading out a lone patient speaker feels like tokenism to me. While my fragile ego loved the attention on stage, I never had any evidence the stories I shared made a difference. And worse, I was the privileged woman who did nothing more than make the audience comfortable. I had so much in common with the health professionals I was speaking to that I barely pushed the envelope.

I’m university-educated, of moderate socio-economic status and have worked in health care my entire adult life. That’s why the conference organizers related to me and why I had such a healthy speaking career. They could see themselves reflected in me. This might sound fine, but here’s the rub: I do not and never have represented the folks who are actually sitting in the hospital waiting room.

I feel uncomfortable being the only patient voice, no matter how good it feels to me to be looked at as the patient expert in the room. There must be other people behind the podium whose experiences and lives are different than mine. I’ve heard a broken record about the lack of diversity in patient representation for years, but this ain’t ever going to change unless us privileged ones hand over the microphone and move the hell out of the way.

I’m opting out of the health conference circuit and sticking with facilitating storytelling sessions with small family groups and guiding staff through reflective practice workshops. That’s my thing now and that’s what is meaningful to me.

If you are a patient or family speaker and you don’t agree with me, that’s okay. All I’d ask if you’d consider your own personal intentions behind public speaking so you can draw your own line in the sand.

Lines in the sand can include speaker compensation, or insisting on diverse patient voices or asking that conferences be Patients Included. If you dig deep inside yourself to find out your own special ‘why’ you share your story, this will safeguard against people using you, too. Your story is worth it and you are worth it too.

It has been two years since I was diagnosed with breast cancer and 18 months since my active treatment ended. There is a rare soul out there who dares to ask me about my health now. Before I had cancer, I didn’t understand how much people are really truly terrified of cancer. Want to throw an awkward wrench into any conversation? Utter the word cancer. Cancer, cancer, cancer! People screech to a full stop and there’s a desperate attempt to fall all over themselves to change the subject to anything else. I’ve learned quickly not to bring it up at all.

After cancer treatment there is no happily every after. No back to normal. No better than ever. This Why the Trauma of Cancer Doesn’t End After Treatment is a refreshingly clear article by Layla Haidrani about life after active cancer treatment ends. It is worth a read for a better understanding of the concept of cancer recovery. This blog post by Molly called I Have Died is stunning and sad in her articulation of what it feels like to be abandoned by friends and family when you have cancer. This collateral damage is real and painful – and it followed Molly right up to her last blog post that she wrote before she died.

My friends who have children with disabilities or my old colleagues who I worked with in the children’s hospital are braver than most. Last week I met a friend for lunch and she opened up by asking: how are you doing mentally and physically? I wanted to give her a Good Friend Medal. She was not afraid to go there, to the Place of Voldemort That Cannot Be Spoken Of.

This is how I explained to her how I was doing. It is as if I got knocked down and I’ve finally gotten back up. But now I’m awfully confused about everything.

This has taken two full years of hard work to get up, which has included the love of a good man and my three children, loads and loads of private mental health therapy, one cancer retreat, a general avoidance of oncologists and the health system, meditation and daily walks. (I explain my sources of comfort here). I’m still shaky and I fall back down easily. I feel as if my resiliency is very low and almost non-existent. I don’t feel better than ever. I feel fragile and vulnerable most of the time. I’m (maybe foolishly?) searching for a publisher for my book and my fragility makes rejection letters exceedingly painful. I think: I can’t go on. I must go on. I’m trying to return to the land of the living but I’m finding the land of the living quite bewildering.

I want to talk about this feeling of confusion. I’ve popped back up and I’m looking around at the world, thinking: What The Hell Is Going On? I’ve shifted but the world has soldiered on unchanged. (Well, politically and climate-wise, it has actually gotten worse). I’m at the What The Hell Is Going On stage of healing from cancer.

A kind colleague recommended a book called Disorientation and Moral Life by Ami Harbin. It is a book of feminist philosophy that explains the reason for my confusion. The author talks about the serious shifts in identity that the disorientations of illness can prompt and that being diagnosed with a serious illness can be deeply disorienting.

Finally, someone who has put words around what it feels like to have been diagnosed with cancer. It is as if I was a boxer knocked out cold in a fight and I have finally come to and struggled up to my feet again. I look around the boxing ring at my opponent and the audience and nothing seems as it was before. This is called disorientation. My regular way of being in the world has irrevocably changed.

Ami Harbin does point out positives to disorientation, including an increased sensitivity to others facing their own vulnerabilities. I can feel that. I have many women with a looming breast cancer diagnosis contact me while they are awaiting biopsy results. I am happy to connect with them, even if it is only to say: I know this is hard. (Write to me and I promise to write back). My new theory is that we can change the world with one kindness at a time. Cancer didn’t give me any gifts but okay maybe this is a gift that comes out of my disorientation.

Cancer causes odd shifts. In some ways, serious illness feels like a personal failure. All the rules I subscribed to (I am in control of my own life, I am a good person, I am a healthy person) were taken from me when I first found a lump in my left breast. Being disorientated means I need to create new rules to make sense of the world.

If you ask me how I’m doing and you sincerely want to know, I will lean on the wisdom from Disorientation and Moral Life and use this quote from philosopher Susan Brison to say:

None of us is supposed to be alive. We are all here by chance and only for a little while. The wonder is that we’ve managed, once again, to winter through and that our hearts, in spite of everything, survive.

Maybe this is called grace? I just don’t know. I have a feeling that my lesson here, at least for today, is to be okay with the not knowing. And so ends this untidy, disoriented essay. /Fin

My son is almost 16. The education, health and human services sectors tell me that this is a transition time for him. Talk of transition is everywhere. There are transition pamphlets and websites and apps and roadmaps thrown at me at every turn.

I hereby declare that I reject the term transition and say instead that Aaron is growing up. System-speak is everywhere: calling friends ‘peer support,’ brothers and sisters ‘siblings,’ and going home ‘discharge.’ I am officially dismissing system-speak. Falling into the habit of talking about our kids this way means we’ve given the power back over to the system. Language matters. I’m not going to let them turn my kid into a one-dimensional cliché of what they think a disabled kid is.

My other two kids grew up and Aaron is growing up too. Having Down syndrome doesn’t stop him from becoming an adult.

I’ve been thinking about why families put off planning for our disabled kids’ future. We have to apply for tax credits, try to work a lot to save money (somehow, while at the same time we have to provide caregiving), secure psycho-ed tests, apply to get an adult file open, meet with social workers, find physicians who will see our kids, forecast for life – our adult child’s and our own – after school ends, which includes limited and rather bleak options for post-secondary school, housing and employment.

This all sucks at a time when we should be surviving our kid’s puberty (which all parents have to do with all kids) and celebrating that our child is growing up. We should usher in their adulthood with joy not despair.

I am reminded of the time when Aaron was first diagnosed 16 long years ago. The joy of a baby’s birth is also taken away from families by the way a disability diagnosis is disclosed. There’s a lot of talk then about ‘burden and suffering’ from health professionals. I say the joy of having a baby gets carted right out of the delivery room.

I’m not going to allow the joy to be taken this time around as my son reaches adulthood. The system tries its best to push me into misery with all their anguished forms, intake processes and assessments.

Growing up should be celebrated, not dreaded. It should be a time of hope and opportunity. Aaron is almost a man now, becoming more and more himself, his character brightly shining through. He wants to be an actor, so we are going to support him with that as far as he goes. I feel lucky to be his mom, to witness his transformation into adulthood.

The other day when we were driving in the car, Aaron turned to me and said: ‘Mom, I am an organic human being.’ Yes you are my son. Let’s celebrate that first. Let’s put you as an organic human being front and centre.

Of course I’ll do what I have to do to get on wait lists, secure funding and fill out forms. But this time I’m going to endeavour to not let the system crap wear me down. I don’t believe in their deficit-based approach. The system is not stealing joy like it did when he was born. I’m simply not going to to allow that this time around. No way. No more. Not today. I’m going to hang onto gratitude for my son with the extra chromosome as tightly as I can.

I walk a lot. After I was diagnosed with breast cancer I promised my daughter – who was then a second year nursing student – that I would walk a minimum amount every day. I have not missed a day of walking for two years, even if I had to drag myself out of our condo for a half hour walk in the pouring rain.

On my walks sometimes I just listen for birds. Other times I take meetings, talk to friends or tune into podcasts.

My current favourite podcast is the Good Life Project. I feel as if lately this podcast is working hard to be more diverse by throwing its net beyond the typical self-help voices. I anticipate my walk every Monday when a new episode is released. Last week, host Jonathan Fields talked to Judge Victoria Pratt.

Judge Victoria Pratt is a judge in municipal court in Newark, New Jersey. She believes in using dignity and respect to restore humanity to the justice system – for both those people who are victims and those labelled as ‘criminals’.

I always try to apply learnings from what I hear to my own world. Beyond a messy divorce, I thankfully haven’t had much experience in the justice system. But I have been a patient in the health care system, had three kids in school, and have a child with a disability who uses services in the human services sector. What I realized listening to Judge Pratt was this:

Dignity and respect can restore humanity in all systems. This philosophy can be applied to health care, education and human services too.

Her interview had so much wisdom about leadership of any kind. I cannot recommend it enough.

Here’s what I took away, assembled in quotes from the good judge herself.

1. Are you serving yourself? Or are you serving others?

Be clear about who you are serving.

2. People need to understand what you are saying.

Speak plain English.

3. Listen, listen, listen and learn from your listening. Judge Pratt talks about asking people who have been arrested to write an essay about themselves. Then she asks them to read their essays out loud in her courtroom, both to give them a voice and so she can better understand them through their stories and life experiences.

Give people voice. Help me see you.

4. Don’t make assumptions. Subscribe to an outreach model to go beyond your walls to foster understanding of different life experiences. Go to people’s homes. Meet them for coffee. Judge Pratt shares an awesome story about going outside the courthouse to stand in line at the food truck…and how this simple act gave her a greater understanding of the people she serves.

Things are always bigger than we think.

5. Do the work to partner with those with lives different than your own. Don’t surround yourself with yes men (and women).

When we have differing and colliding points of views, we always arrive at the best decisions.

6. Stop making assumptions. Again with the outreach – if you say you do engagement, then you must do outreach. Go to the people to meet them where they are at – not where you are at.

(People’s truth) doesn’t reveal itself in the office.

7. Every single day, tap into your original calling. Do not forget your original calling. Do not let the system take this away from you. Your calling is yours and yours alone.

It is important to show up for what you are called to do.

These are crucial concepts for leaders everywhere. If you subscribe to the notion (like I do) that we are all leaders in our own lives, then Judge Pratt’s wisdom applies not just to those with a title and power, but to all of us too.

If she can treat people in her courtroom with dignity and respect, why can’t the rules of dignity and respect be applied to patients in hospitals, or students in schools or clients in the human services sector? The answer is a mashup of Judge Pratt’s approach and the Brene Brown quote above: it has to do with courage and integrity.

If you say you believe in patient-centred care, or student-led education or client-centred practice, then you must demonstrate that by treating the people you serve with dignity and respect. This is integrity. And this takes courage. It is a simple and as complicated as that.

ps: If you don’t have an hour to listen to the podcast, check out Judge Pratt’s TED Talk.

This essay was originally published in the Globe + Mail on October 6, 2005.

I gave birth to my baby boy, and he was beautiful. He was the product of a second marriage for both of us, evidence that broken people can heal. He symbolized hope and joy. He was our love child.

His birth was everything I wanted. No interventions, no medications, a baby who slipped out naturally after a few pushes to meet his parents. Even in the late stages of labour, Mike and I were giddy with excitement in between each contraction. “The baby is coming,” Mike kept saying, and I would grin and nod and kiss my love before another wave of contractions pulled me back under.

We took him home after 10 hours, and he was all wee and jaundice-yellow. He was a quiet, soft, sleepy baby with a sweet mop of hair on top of his head. His round face was mine, and his eyebrows were blond. He was our little peanut, our button. His dad and I fell deeply in love with him.

Then the dark clouds started to settle in. At the end of his two-week checkup at the clinic, the doctor hesitated. I could tell he wanted to say something.

“Do you remember we talked about prenatal testing?”

Yes, I had. I had declined the testing. I knew I’d carry my baby to term no matter what.

I looked him straight in the eye, and took a deep breath. “Are you trying to tell me that our baby has Down syndrome?”

Retrospect is such an easy thing. I had not forgotten the day after Aaron’s birth, when I had gotten up after a long night of scrutinizing my boy and typed “Down syndrome” in the Google search engine. I had broached the subject with Mike, and he had scoffed at me for being paranoid. Then I had asked the public health nurse later that day if she thought Aaron had Down syndrome.

“Yes,” she had said gently, but then she had inspected the palms of his hands and his toes and concluded that he had a heart-shaped face like his mom, and eyes like his dad — that’s all. No other signs. So we filed away this scare in the back room of our heads and carried on. Whew. That was a relief.

But when the doctor mentioned the prenatal testing, I knew. I could hear my heart beating in my ears. I was holding onto my baby for dear life. “Oh,” I said. “Can I use my cell phone here?” I had to phone Mike, immediately.

I don’t recall our conversation. I am sure I sounded as if I was being strangled — and, in a way, I was. I do know that I sat in that examining room, nursing Aaron until Mike arrived. I don’t cry easily and there was a choked bundled of tears sitting just beyond my throat. I remembered to breathe.

Mike wanted to carry Aaron over to the lab in the hospital. He wouldn’t put him in his stroller, and he marched proudly through the hospital corridors cradling his son. It was as if he was saying, “I’m looking after my boy, no matter what!” They drew blood from Aaron’s little arm. Mike and I didn’t talk much — I felt sick as the needle went in and Aaron gave a cry of protest. We had to wait two long weeks for the result.

We were back at home. Aaron was napping in his car seat. The day was beautiful . . . mid-April, sun streaming out of the prairie sky. We sat on the balcony of our house, watching Aaron sleep, discussed how our doctor was wrong, how he was too inexperienced, how he had surely misdiagnosed.

There was a waft of music coming from the house across the alley. I strained to make out what song it was — it was coming from an open bedroom window. A young man lived there with his parents. He had a rare chromosome deficiency and is one of the few people with such a condition to be alive. He wasn’t expected to live beyond a year old, but there he was, 20 years old, blasting music out of his window.

The song finally became clear. It was a song from my memory of junior high school dances. Our neighbour was playing ABBA’s Take a Chance on Me.

The results came back after the two weeks. And yes, our baby has Down syndrome. The deep chasm of grief seemed endless when we found out that the baby we expected was not the baby we received.

But slowly the sun peeked out from behind those clouds, and I was able to get out of bed and go about my business. My baby, now two years old, did not allow me to stay stuck in the grief.

Instead he holds out his chubby little hand as we trundle down the sidewalk, both delighting in this warm fall day. My ABBA-playing neighbour is outside as we pass his house, and his face lights up as I greet him by name. Take a chance on us, indeed.

My son Aaron was involved in a fun project with talented Edmonton-based photographer Leroy Schulz. It is called Miguelito’s Little Green Car. Aaron joins the ranks of celebrities like Kate Middleton and Gordon Ramsay who have had their photos taken by Leroy with this little green car. (Aaron was especially thrilled to have his picture join Snoop Dogg’s).

Leroy explains the intention of the project:

This project is meant to remind us that we are all connected. Thousands of people from around the world from all walks of life are interconnected through the green car.

The photo itself is fabulous It was taken on our terrace last week just before the big snow on the west coast. I especially love Aaron’s interview and how he describes himself. He speaks with brevity and communicates what parts of his identity are most important to him – you will note that his YouTube channel ranks up there. He spends hours of his time working on Dangerously Waddingham.

I am in Grade 10 and almost 16 years old. I was born in Edmonton but now I live on a mountain in Burnaby, British Columbia. I have Down syndrome. This means I have an extra chromosome in my DNA.

I want to be a YouTube star!

Indeed, we are all connected, no matter (or does it matter?) how many chromosomes we have. Being human is simply enough reason to be connected. Do not fear the differing chromosomes.

While I adore initiatives like Rick Guidotti’s Positive Exposure program, I’m also a big fan of the organic inclusion of disabled people like my son in regular campaigns – not as a ‘special’ addition, but just as a matter of course.

Bravo to Leroy for expanding the diversity of the Little Green Car’s portfolio. This is much more than a picture. Aaron’s inclusion in Miguelito’s Little Green Car project demonstrates to our son that he matters too.

Whenever I’ve been fraught with anxiety, particularly since the stupid cancer arrived, my youngest son comes up to me and says firmly: Mom. Sushi, bath and reading.

My boy knows what calms me and reading is one of those things. I made a list of booksthat soothed me around my cancer treatment time and I’m going to add The Unwinding of the Miracleby Julie Yip-Williams to this group of illustrious books.

The Unwinding of the Miracle book began as a blog, which of course sparks hope to those of us who write about our own cancers. It saddens me, though, when I realize how many books were published posthumously – like Julie’s book, and Nina Rigg’s The Bright Hourand Paul Kalanithi’s When Breath Becomes Air. I hope the authors got to see their book in some sort of form – a draft of a cover, or a printed manuscript – before they left this world.

I am still drawn to books about cancer two years after my diagnosis. This might seem weird to non-cancer people. As one relative said to me: why can’t you just put it behind you? I can’t put it behind me. It is part of me now. We all integrate cancer into our identities in some way, even those people who seem to be ‘over it.’ (They aren’t over it. They just don’t talk to you about it). Reading stories about cancer, especially metastatic cancer, helps me shine a light on the Bogeyman.

The Unwinding of a Miracle is both a memoir and a commentary on dying. I read the first few chapters impatiently, hoping the author would get to deeper reflections beyond her chronological story. Don’t get me wrong, her story is fascinating – Julie was born blind in Vietnam, arrived in Hong Kong on a boat as a refugee when she was three years old and eventually settled in California. Hers is the American dream story – she overcame the struggles of her childhood, went to Harvard Law School and practiced as a lawyer in New York City. She got married, had two children and lived an affluent life in Brooklyn. But then at age 37, she got colon cancer.

When I read a book, as in real life, I like to cut through the chit chat to get to what’s important. I’m glad I didn’t give up on The Unwinding of the Miracle, because my perseverance paid off. The first chapters are mostly a re-telling of Julie’s life up until cancer. The rest of the book is a deep dive into what I call what really matters in life.

I’m always searching for commentary on the patient experience in books about cancer, and Julie does share some of that. Her diagnosis occurs in a sketchy hospital far from home, where she’s travelled for a family wedding. She calls the physicians there ‘dubious’ and arranges to get transferred to a ‘more reputable’ hospital. This was a very American reminder of how having good insurance and money gets you better care (in Canada, there’s no transferring around hospitals, no matter how wealthy you are).

She speaks candidly about her forays into alternative medicine, “…I could roll the dice with traditional Chinese medicine, which after all has been around for thousands of years and is a part of my noble Chinese heritage.” Those who mock patients for searching for complementary treatments will gain a greater understanding of why patients stray into alternatives. (It is because we are afraid, we feel ignored by our doctors, we have lost trust in the health care system, we go through bouts of feeling desperate to do anything to live just a little bit longer).

I admire of Julie’s telling of what she terms ‘her darkness’ that hits her two years after diagnosis, as she’s deep into Stage IV cancer. “There is a natural, intuitive fear of darkness, people who are gripped by it are ashamed to speak of it,” she says. But speak of it she does. The book turns here from a chronological tale to one that is thoughtful and reflective. I imagine this mirrored Julie’s own experience having cancer, which can flip flop between denial and to trying to stay on this side of cheery to dark depression and eventual sad acceptance.

Julie shares many jewels in the caves of suffering (as David Gilberthas termed) in her book. These jewels are not necessarily shiny or sparkly but they are hard-fought jewels, hard and dusty.

I find and continue to find delusion, fake optimism, and forced cheer in the face of a devastating diagnosis where death and all the fears that come with it must be avoided at all costs.

If you aren’t afraid to consider death, if you believe that people facing death can offer up jewels in the midst of their suffering, then The Unwinding of the Miracle is for you. It isn’t a light book but it is an important book. Julie Yip-Williams’ legacy is her story, her children and how she lived an unflinching and authentic life, right up until the end.